Domain | Definition* | |
1 | Anxiety | Being concerned, worried, fearful or anxious |
2 | Cognitive function | Being able to concentrate and remember things (concentration and memory issues) |
3 | Coping | Being able to deal with the social and emotional impact of the disease on oneself (includes managing stress, embarrassment) |
4 | Daily activities including housework | Being able to fulfil housework tasks, shopping, other necessary daily activities |
5 | Dactylitis | Sausage finger or toe, full thickness inflammation of a digit or toe |
6 | Depressive mood | Feeling sad, feeling down or sorry for oneself or feeling depressed |
7 | Discomfort | Experiencing noticeable physical issues/discomfort, which are not pleasant but not causing pain |
8 | Disease activity | Presence of disease symptoms |
9 | Embarrassment | Experiencing awkward self-consciousness or embarrassment in public or social situations |
10 | Emotional support | Availability of emotional support from family members and friends |
11 | Emotional well-being | Feeling good about oneself |
12 | Employment/work | Being able to perform activities related to work/employment |
13 | Enthesitis | Pain and inflammation at the site of a tendon bone interface (tendon insertions on bone) |
14 | Family roles | Relationships with family and close friendships (includes parenthood, marriage) |
15 | Fatigue | Experiencing fatigue, tiredness, lack of energy, feeling worn out or exhausted |
16 | Financial impact | Experiencing financial loss due to treatment cost, work loss, early retirement, cost of assistive devices, etc |
17 | Frustration | Being annoyed or upset about not being able to achieve what one wishes |
18 | Global health | The overall health status of the patient |
19 | Independence | Being able to maintain one's independence, not being dependent on others for help |
20 | Intimacy and sexual relations | Satisfaction with intimate relationships |
21 | Leisure activities | Being able to engage in leisure activities |
22 | Medication side effects | Experiencing undesired secondary effects from taking psoriatic arthritis medications |
23 | Nail psoriasis | Having discoloured, lifting, pitted nails affected with psoriasis |
24 | Pain | Experiencing an unpleasant physical sensation that aches, hurts in one or more joints or the spine |
25 | Participation in social activities | Ability to participate in social activities |
26 | Structural joint damage | Join deformity, damage, instability to one or more joints or the spine |
27 | Physical function | Being able to perform physical activities (includes upper/lower extremity functioning, balance) |
28 | Psoriasis symptoms | Experiencing itching, dryness, pain, plaques, thickness, cracks, bleeding, scaling of affected skin including genital areas and the scalp |
29 | Self-management | Being able to effectively decrease or minimise the physical impact of disease on oneself (eg, choice of non-pharmacological interventions, prevention of disease worsening, use of aids, diet, lifestyle, pacing, relaxation etc) |
30 | Self-worth | Shame, self-esteem, feeling accepted or rejected by others (can range from feeling valued to feeling helpless, useless, ashamed, guilty or rejected) |
31 | Sleep quality | Being able to have a restful sleep |
32 | Social support | Availability of family members and friends for help |
33 | Spine symptoms | Back/spine symptoms of pain, stiffness |
34 | Stiffness | Experiencing resistance or rigidity in one or more joints, tendons or the spine, which prevents smooth and full range of motion |
35 | Stress | Feeling under pressure and under tension |
36 | Swelling | Enlargement of one or more joints |
37 | Systemic inflammation | Blood test such as the acute-phase reactants ESR and/or C reactive protein |
38 | Treatment burden | Impact of treatment and monitoring of disease or treatment (eg, financial or time commitment) |
39 | Unpredictability of disease activity | Uncertainty in the short term of being symptom free or able to engage in activities |
Domains appear in alphabetical order.
*Domain definitions represent focus group participantsā descriptions of the corresponding domain and were reviewed by the working group. ESR, erythrocyte sedimentation rate.